When your oncologist says. "Right side of skull has the most intense uptake"...

[Timtam56]

High all.

I had a monthly review today.

My onc is on research sebatical. So new onc today.

I've always felt my regular onc doesn't want to tell me to much. I hate that. I'd rather know everything.

So today I asked how things are going and talked about my headaches that happen on the left sometimes. She said, let me look at your results from your march scans. The she said, the "Right side of skull has the most intense uptake, and has the biggest cancer deposit in my skull "...

What would you all take from that? I'm not afraid to hear your true thoughts either.

I'm pretty well otherwise and it my 4 year anniversary of starting on the meds. Still on first line of treatment also. So I feel very lucky for that.

Thanks everyone.

[Bettybuckets]

Hi Tim Tam- that would be a lot to process but helps explain a lot. So great that you are still in first line after 4 years and would imagine there is something out there to keep you going for another 4 years at least. Be hopeful! I wonder why your inc didn’t share more? But maybe it is a kindness to avoid all that worry?

[NPmary]

Please tell your regular doc and your new doc what you told us: l want to know everything and l want to know what it means for me (you can go into detail what it means to you in terms of symptoms, quality of life, length of life, treatment . . .).If you only have mets to bones that's great because bones are not a vital organ that will kill you.

I have extensive bone mets , also in the skull and l get sharp, short painful bouts of pain in my soul. I get other tension headaches that aren't like that.

[Mary115 in reply to NPmary]

NPmary. I am not sure what you meant by these words, but I feel them nevertheless and thank you for them: "short painful bouts of pain in my soul." At other times I feel as everything hurts but my soul.. Go figure!! I love your wording ..

[NPmary in reply to Mary115]

That's a typo! I thought l wrote skull.But soul does make quite the impact. Truth be told this has been quite the 5 year soul journey forme. I have had some bouts of soul pain, have done a great deal of spiritual reading and seeking, journaling, reading and learning about death and dying. I was in a group led by a death dollar for several months - l was the only person in the group with metastatic cancer it was a very helpful experience. ❤️🌺❤

[Mary115 in reply to NPmary]

Wow.. A serendipitous mistake! Soul meeting. Connecting core goodness to core goodness. What an amazing journey you have been on.. Wow again

[NPmary in reply to Mary115]

Namaste ❤

[kokopelli2017 in reply to NPmary]

hi Mary. I also have skull mets.....I can feel them when they arrive....like little bumps and are sore. like a 'tender' kind of soreness....or sometimes feels like a bruise. and occasionally they get a scaley- like scab covering. some, not all. it's like I get a flareup of pain.....and can feel them hurting without even touching them. does any of this apply to you? or others? it is the one subject I routinely forget to ask my oncologist about at my very short appts....and I am curious if this is a normal presentation?

sorry to bother. hoping you can shed some light....

thank you....

carole XO

[Timtam56 in reply to kokopelli2017]

Please hijack my post

[kokopelli2017 in reply to Timtam56]

thanks Timtam....very nice of you. do you happen to experience any of the symptoms I described? trying to figure out what is the 'normal' presentation of skull mets....if there is a 'normal'. sorry I can't be of help but as you can tell, I have more questions than answers on this topic😉. I do think Nocillo's idea of measuring the 'largest' met is great advice.

great news that you have been on first-line treatment after 4 years.....congrats🎉.

[Timtam56 in reply to kokopelli2017]

Oh and…. I have had trouble wearing interesting glasses, as in spectacles, because the frames I have hurt my head so much. Just behind the ear on my right side. And I’ve had to shave my hair on both sides to eliminate the itching and scalp soreness I get from my hair. So these days I wear a sort of moshav style. Don’t care what anyone thinks of me.

Me and Stevie.

[kokopelli2017 in reply to Timtam56]

the glasses suit you! and love that hairstyle on you.....very attractive! and of course little Stevie🐾 is adorable😊

[Timtam56 in reply to kokopelli2017]

Oh yes that bruised feeling. I know it well. My scalp hurts. Itchy.... Sort of deep in the skin. Not just on the surface?

I can't talk about this more if you want to. But I think we are similar.

Also. Bloody short appointments. Really feel like I hate talking up thier time.

[kokopelli2017 in reply to Timtam56]

thanks for the feedback! very helpful. and yes....deep in the skin and not on surface. just one more question please.....do you get any of the scale-like scabs that are very sore? my oncologist just retired.....she needed to....she was very burnt out. hoping my next one will have more info to share and not so short on time🤞. sorry to hear it's the same for you😡

[Timtam56 in reply to kokopelli2017]

No. I don’t get sores. Or scabs. That must be really upsetting for you. A new oncologist might be a lot better for you. Oh gosh. What we have to put up with!

[NPmary in reply to kokopelli2017]

Carol l have had that same experience flare up of pain on mandible and forehead and enlarged bone on forehead. Scabs and rashes on skin elsewhere. I caused the scabs on my scalp by scratching the itchy, dry scalp - of course l know l shouldn't be doing this. At the beginning l even felt like l could feel cells crawling up my neck in an artery!Don't feel weird or terribly unique if your doc doesn't validate your experience, or act like it doesn't matter, or says he or she never heard of such a thing. The docs are good at what they do and know, but it is a rare thing for them to deeply understand the lived experience of metastatic cancer (that's what we are here for! haha ).

Mary ❤🌺❤

[kokopelli2017 in reply to NPmary]

thanks Mary for all that info! well at least I don't feel like a freak with all these sores and bumps all over my scalp....meaning now I know it is the mets....wasn't entirely sure what it was. it's amazing how fast 'they' can appear. I usually can feel the pain/soreness before I can feel any bumps....quick to appear and slow to leave (or calm down). and have to admit that a lot of the scab like sores are self-inflicted....very itchy like you said.

I will bring it up to my 'new' onc when I see her in September. my previous oncologist, who just retired, rarely admitted that my side effects existed....or that they exist at all. she once told me she never had a patient on ibrance who had ILD(interstitial lung disease) which I find hard to believe....she had been in practice for over 40 years. she also said she never had a patient with ONJ....once again, not believing that either. she seemed to discount any negative side effects...including something simple like fatigue! and yet I know from this site that these side effects do indeed exist and more often than they would have you think.

thanks again for the feedback! doesn't change that I have the skull mets but does validate their presence and strange presentation😉.

best wishes.....

carole💛

[Timtam56 in reply to kokopelli2017]

Carole. So interesting reading your post.I just can’t believe how some medical people are. It’s so sad for the patient on the end of stuff like this. It’ could make us feel like we are imagining things.

I had told many of the docs I saw before diagnosis about the terrible pain etc. Was not believed. And I also told them I had a feeling like being gnawed by rats inside my sternum. It was the most odd sensation. They would look at me with disbelief on their faces! God I hated that look. Dead pan. Made me feel silly somehow, for explaining it that way. But that was the most accurate way I could tell it.

It’s doesn’t happen so much anymore. But what I’m saying is that the skull Mets too, sometimes have a feeling like little creatures crawling inside my scalp.

I know docs don’t have MBC so they don’t life our experience. But….It would be so nice to just have a doctor reflect back to you a sensible response like… “That must feel so strange for you” or, “What a difficult thing to cope with”. Something that resembles a real response.

Anyway. I have better things to worry about than how bad they are.

I have a life to live.

So I’ll go now and concentrate on that!

Love to all.

[kokopelli2017 in reply to Timtam56]

Chris....there is so much 'gray' in this mbc and my oncologist only did black and white. hoping my new oncologist can recognize the 'gray'?? not every mbc patient presents with same symptoms and side effects. a little empathy from onc would be nice. or at least don't dismiss my side effects altogether. I realize some of us have wonderful oncologists but not my experience so far. I think your descriptions were pretty spot on....I can understand what 'rats gnawing inside your sternum' might feel like or 'little creatures crawling inside your scalp'....you gave very descriptive examples. so I get the frustration of the 'deadpan' look😳.

so yes, what we don't get from our medical team....we come here for! can't imagine how alone I would feel without the empathy and support of you all❤️

sending BIG hug....

carole XO

[Timtam56 in reply to NPmary]

So true Mary about the docs being good to a point. That’s why I need to be able to come here sometimes to check in. And hearing that I’m not alone makes it all so much more like I’m well……. NOT ALONE! Funny that!

[kokopelli2017 in reply to NPmary]

hi again Mary. I don't want to hijack TimTam's thread. could you please PM me instead. will be much appreciated. carole xo

[NPmary in reply to kokopelli2017]

Sorry - l didn't see this til now and just replied.

[kokopelli2017 in reply to NPmary]

no worries Mary. Timtam (Chris) graciously gave her approval. and maybe others learned from this as well. hope so🤞

[Nocillo]

If it’s the largest in your skull, I would ask the measurements. Maybe it’s not alarmingly large?

[kokopelli2017 in reply to Nocillo]

good point👍. xo

[13plus]

Hi Timtam, well that would be a shock to hear I'd think, being the first time you've been told that. Did you ever have a feeling your other one wasn't telling you everything? So if you've been getting headaches that would certainly explain it! I hope they're not too bad, that would be my concern. And I think, if I were you, I would really want to know what is the chance of it going from the skull to the brain. If the skull mets are like the rest of our bone mets then I wouldn't personally worry so much, though I guess you will want to avoid activities that put you at risk of a head whack! 🙃

If your headaches or other symptoms get worse I would definitely seek to get a new treatment asap, you've had a nice long ride with your current one. So if it's Ibrance and letrozole, for instance, perhaps you could just switch to Ibrance and faslodex? I don't recall what you're on but I would preemptively talk to this new onc about what your next options are for treatment, so you are prepared

[Timtam56 in reply to 13plus]

Sorry 13plus. I already knew I had nets in my skull. It's just that I wanted to know what "intense uptake" meant.

[NPmary in reply to Timtam56]

Not an expert at all but l think it means that area has higher/more active metastatic activity than the other areas. Let us know how it goes with your doc and what you learn. Mary.

[Timtam56 in reply to NPmary]

I’ve got a nurse coming to give me my denocumab injection today. I’ll ask her too.

[13plus in reply to Timtam56]

It does mean more metabolic activity indicating more cancer-related activity.

[Timtam56 in reply to 13plus]

Thank you for that clarity. How wonderful to hear clarity.

[Discocat]

Hi Tim Tam,I understand your apprehension. I have extensive bone mets including my skull too. My oncologist also has so far been reluctant to give more specific details. In my reports areas are listed but no details on the amount, size or position of masses. When I asked once what it meant by “spine” for instance ….meaning which vertebrae and where?

She explained that there are multiple masses throughout that area in all vertebrae. So I’ve come to think that’s the case with all the listed areas in my case.

I’m hoping for more details after my up coming full body bone scan and CT in a few weeks. It will only be my second time having these, but will hopefully give us something to compare with the original ones taken about a year ago when I was diagnosed. It’s also been mention I think by others that sometimes areas that show up are actually not active but are more like scarred bone areas that are in the process of densifying.

Concerning the skull mets…I sometimes get localised tenderness and aches in reoccurring areas and have wondered if that is connected to the location of my mets…

Sorry can’t be more specific , I might have more info after my results are back. I’ll let you know.

Best wishes to you,

Zoe xx

[Timtam56 in reply to Discocat]

Thanks Zoe. Yor pains sound a lot like mine. And also. I think they don't always mention every single met by size etc., probably because there a usually many of them. I have too many to count. Spine, ribs. Hips. Skull..... 😫

Chris.

[Discocat in reply to Timtam56]

We seem to have the same areas. I’m riddled in all bones except arms and legs….so like you, skull, spine, breast bone, shoulders, ribs, and pelvis/hips.Think your right about them being too numerous to detail. On a positive note so far my mobility is unaffected and I hope this is the case for you too.

I was worried about the strength of my back, especially having heard some of the awful issues others have with large tumours displacing vertebrae….which is why I’ve sometimes tried to get more direct info.

But when I asked if it’s ok to exercise, my oncologist is adamant that I can and should stay as active as possible…just no weights or excessive jumping motion.

Do you sometimes get a sensation in areas of your skull that makes it seem like parts are paper thin and really bruised like and tender? I get this on the back right side. Gentle massage and a cool shower help fade the discomfort.

Hope your enjoying your weekend Chris! It’s hard to imagine that your experiencing winter now! I’m sweltering in Cyprus currently in the full blaze of summer!!

Take care and keep warm !

Zoe xx

[13plus in reply to Discocat]

The sensitivity and aches is the Mets, I had that happen with my pelvis when the meds weren’t working so well. I only switched when I got a new lesion in a completely different area of the pelvis to my previous scan

[Fiercefighter13]

Hi Tim Tam! I was taken aback with your post. I don't understand why your doctor wouldn't have told you about the skull metz, as soon as they became visible. I'm a lot like you, and want to know everything.....and as soon as it comes up. For me, it gives me a sense of control, since my body, is MY body and I want to know what is happening. Plus, it gives me the chance to talk about things with others, this group in particular and do research to bring questions and suggestions back to my doctor. My last doctor was tight lipped about everything, I switched to my new doctor when I was diagnosed with metz back in 2019. My new doctor gets into the nitty gritty with me, the good the bad and the ugly, and I love that about her. I hate surprises, and I can imagine this was a surprise you didn't expect or want! Take care....

[Timtam56 in reply to Fiercefighter13]

Oh. I have misled you all. I knew I had meets in my skull. Lots of them. As well as loads of them in other parts of my bones. (So far... Bones only.) what I didn't understand about this new oncs words were, "intense uptake"

[kokopelli2017 in reply to Timtam56]

Timtam.....no!...not misled. that implies intent. and you did not intend to mislead.....just a misunderstanding is all. happens sometimes when interpreting written words. personally, I did not read your post and think you were brand new to skull mets.....I assumed you were talking about the description of 'intense uptake'. but I can see where that could happen. no worries! carole xo

[Fiercefighter13 in reply to Timtam56]

I understand now! I'm sorry I misinterpreted your message, it can be hard to read the written word as opposed to having a conversation sometimes. It's good to hear that you were aware of the skull metz and it wasn't a surprise, just the intense uptake. My hope for you is that your meds work well for you and walk your metz back, or even render them NED. This disease is so hard to navigate, interpret and understand. Best wishes, always!!

[Tam-56]

I’m like you when it comes to knowing up front what is going on with my MBC! It must have been unsettling to say the least when the new Onc read your scan results to you! Here in USA the hospital posts my scan reports on a portal that I can access. Some of the information is foreign to me but gives me the opportunity to formulate questions and do research before I see my onc. I’m sure if it was a real concern, he would have gone over with you a new treatment plan or at least had a discussion. Did you have an MRI of the brain or a CT scan of the brain? I’m not a medical professional and not sure what UPTAKE actually represents...and when they refer to the skull….is that the area between the scalp and the skull…and not the brain? I hope you can get in to see your Onc and get your questions answered …or maybe get a second opinion? Try not to worry too much. I’m sorry I couldn’t be more helpful. It is good you are feeling well aside from this development.

I’m at the 4 year mark on Ibrance and Letrozole as well. Hang in there and enjoy your pup and painting. Keep us posted!